Understanding Multiple Sclerosis

But You Look So Well, Dear

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Some people with Multiple Sclerosis seem more impatient when they are in remission. This is partly due to a need to get as much accomplished as possible while there is time.

To a person who may be facing a return of symptoms at any moment, down time is time wasted.

Also, just as there is more energy available to do what he wants, a person in remission is able to fight and argue more fully.

The lifting of fatigue enables the MSer to interface with life, in all its aspects, more easily, and the different sides of one's personality become more visible as well.

Such a person is motivated to deal with some of life's conflict areas while he has the physical, mental and emotional resources to do so.

An overwhelming sense of fatigue is one of the most familiar and discouraging symptoms of Multiple Sclerosis. It saps your strength to do the simplest of daily chores.

The fatigue factor is so terribly debilitating that the sufferer easily loses the will to fight it.

Fatigue accounts for a large percentage of the frustration of those with MS, who may not be wheelchair bound. Others often assume that if one looks well or moves well, one is well.

People even loved ones, have difficulty understanding what the fatigue factor consists of, why the MSer wakes up as tired as when he went to sleep, or why the afternoon hours may be the most tiring.

How you look may be incongruent with how you feel. The cause of Fatigue is invisible to others, but the effects of fatigue are not invisible to them.

Four Major Patterns Of MS

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1. About 20% of the MSers experience little to no disability. These persons have a comparatively Benign form of the disease.

   This does not preclude fatigue, anxiety, and family adjustment problems, but it does mean that these people can continue with a normal or near normal schedule and little interruption in activities of daily life.

2. Close to 25% of MSers have an Exacerbating-Remitting form, which involves more frequent attacks that clear up - though less completely.

   These persons can look forward to long periods of stability, but they are often laced with mild disability.

   Mild to moderate adjustments in lifestyle and work habits may be advisable during periods of exacerbations.

3. About 40% of MSers experience a Chronic/Relapsing form. This type is often punctuated by episodic increments.

   Remissions do occur, but they are less often and with less completeness. These individuals may ultimately most experience moderate disabilities in the long run.

   For these people, work and dailyactivities should be planned well in advance.

4. The severest pattern of disability, the Chronic/Progressive form of MS, is seen in approximately 15% of sufferers.

   Without the benefit of remission, an insistent and dramatic worsening of old symptoms, along with the introduction of new ones leads to increasing loss of functional skills.

   This group may require assistance in daily living and may have limited opportunities for employment, except by creative planning and strong personal initiative.

Process Of Adjustment

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Adjusting to MS is particularly challenging because of the peculiar nature of this chronic disease.

Just as one thinks that the waters of change are calm, and smooth sailing lies ahead, wham! A boatfull of hopes, expectations, goals, and plans is upset, and one feels the desperation of beginning all over again.

Neither complete stability nor inevitable downward progression is typical of MS. Thus, what one most expects is the unexpected.

An individual with MS, goes through a back-and-forth process of adjustment and readjustment that accompanies each remission and each new exacerbation.

Because each new attack can alter the physical, psychological, and social conditions of a person's life, the need to adapt to change itself becomes intensified with this illness. Uncertainty about the future never ends.

The MSer may interpret minor changes in how he feels as evidence of an exacerbation, and each exacerbation may be considered a first step towards total disability.

It is easy to see how the chronic threat of exacerbations can play upon the anxieties of even those who have made many successful adjustments to their illness already.

Each new exacerbation may cause your ability level to slip another notch.

The diagnosis of Chronic-Progressive MS is disconcerting, poorly coordinated hands, then paralyzed legs and increasing levels of fatigue are extremely difficult to adjust to. The real definition of "Progressive" soon becomes quite clear.

Not only does the MSer go through a process of adjustment but, the intimate others in his/her life must go through it too.

The rate and intensity with which they adapt may differ and communication, along with other aspects of their relationships may become strained.

People differ in the ease and time it takes for them to travel from initial shock to general acclimation, from denial to acceptance, and then to getting on with the rest of their own lives.

The denial stage can be punctuated with shock and also disbelief.

Surrounded by images of youthfulness and all the triumphant technology of modern medicine, we believe that we are immune to illness.

Our friends and family are filled with the energy and the drive of people with places to go and with things to accomplish.

How can we be stopped cold, suddenly, in our tracks by something we can't see, maybe never heard of, and certainly, never expected? It is hard to believe that it is happening to me!

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Anyone who has the complications of a chronic disease or disability has difficulty making plans. Activities that were formerly anticipated with relish are now regarded as less achievable.

Very often, acquaintances and even loved ones do not understand enough to help someone with Multiple Sclerosis along.

Some friends do become more available, when an MSer has adjusted to his illness enough to feel comfortable with a group, despite an inability to participate in the same way as before.

Old ways of assessing oneself are replaced by new, more realistic ways in the adapting-adjusting stage. Perspective broadens as the MSer re-emerges into society.

He is better able to see the talents and strengths, which are not part of his illness. Multiple Sclerosis does become part of your life but, not the whole of it.

Though symptoms may always be present, a MSer makes coping with his illness secondary to meeting his goals in life.

It is worth repeating, that the adjustment to Multiple Sclerosis and its unpredictable course is not a once-and-for-all event, never to be faced again.

Active problem solving replaces the defense of denial, that was present in the early stages of adjustment.

Yet, when symptoms increase and new demands must be met, Shock, Anger, and Depression are aroused once again. The whole entire business is ongoing.

Nevertheless, the first phase of the continuum from denial to adjustment is typically the most difficult one.

The support of family and friends tested and enlisted, the possibility of change in lifestyle discussed, the fear of disease and death confronted.

No two people adjust in the same way. Probably the most important ingredients in the adjustment process are the personal coping resources, a person brings to his encounter with Multiple Sclerosis.

Is My Thinking Okay?

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Multiple Sclerosis strikes young adults in their physical and intellectual prime. While MS can mildly impair complex thought processes.

The potential for alteration in one's ability to think and remember, may also be an aspect of the disease.

The MSer is typically more aware of the overt physical synptoms commonly associated with MS. Subtle Cognitive changes may also begin to occur in less than half of all MSers.

But, they rarely become severe problems. MSers can begin to have difficulties performing tasks that had previously been automatic.

For reasons that no physical examination can answer, a MSer can make errors recalling job responsibilities they have known for years.

It is perplexing as well that there is no correlation between changes in Cognitive functioning and the severity of other physical impairments.

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MSers show the greatest decline in areas that involve Movements, Coordination, and Visual Skills. They can also experience a degree of impairment in Perceiving what they are Hearing.

Sometimes it may become difficult to Perceive Individual Speech Sounds, as well as to Remember and Respond To Rhythms.

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Memory can also be affected when a MSer's attention is not specifically focused. This more frequently occurs when alertness is compromised by Competing Thoughts.

At such times, an MSer may be described by companions as having "a one track mind," able to concentrate in only one direction at a time.

Memory can also be affected by fatigue. It is often difficult for anyone, particularly a MSer, to remain visually alert at night.

The darkness, as well as approaching car lights, can be very confusing and frustrating to someone already exhausted by chronic illness. One can even lose one's way home.

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Multiple Sclerosis in contrast to many other Neurological Diseases, is responsible for only mild impairments, if any at all, at grasping the nature of a problem.

The ability to get to the root of what other people say and mean also remains intact.

In general, MSers have the most difficulty and show some Dysfunction in all tasks requiring Motor Performance. Their Motor Speed and Coodination is decreased.

In contrast, little or no compromise is seen in patients' ability to respond to verbal information, comprehension of verbal communication, or problem solving.

Multiple Sclerosis doesn't usually interfere with a MSer's ability to use Verbal Reasoning in problem solving.

Clinical Events and Pathological Correlations

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Most of the common symptoms and signs of Multiple Sclerosis may be correlated with particular findings in the Central Nervous System (CNS).

For example, impaired vision in one eye may be associated with findings of Optic Neuritis.

Attacks of double vision may be linked with loss of Myelin around nerve pathways in the Brain Stem, involving areas that control coordination of eye movements.

Weakness or numbness in the legs may be related to findings of Myelin loss in a patchy fashion throughout the Spinal Cord or in some cases at a single level of the Cord.

Different parts of the CNS are involved in different MSers and at different times in the same person.

There is a tendency for selective areas to be picked out in some MSers, such as Motor Pathways to Legs, Coordination Centers, or Visual Apparatus.

When CNS tissue is examined, the areas of Myelin loss stand out as somewhat gelatinous, disclored areas.

They tend to congregate mainly around the chambers of the Brain known as the Ventricles and also around Veins in the Brain or Spinal Cord.

A Neurologist can pinpoint where DeMyelination has occurred by examining the patient and localizing the findings to specific areas of the CNS.

The MS diagnosis can be confirmed by various testings. A Spinal tap will usually show cellular reactions in the Spinal fluid.

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There are certain kinds of protein changes that are common in MS. The laboratory can measure levels of Myelin Basic Protein, OligoClonal Band patterns in the protein, and alterations of the Immune proteins manifest by elevated levels of IgG or Gamma Globulin.

IgG is an Immune Globulin which is sometimes elevated in persons with MS. There are relatively specific protein changes suggestive of M.S. that are present during attacks or in the Progressive state.

However, these are not present in every single case. In addition, a MRI will produce pictures of the Brain or Spinal Cord and will show the extent of DeMyelinated areas in many, but not all cases.

Possible Causes Of Multiple Sclerosis

Currently the most popular theories of causation are the infectious or viral theory and the AutoImmune theory.

In simple terms, there is evidence to suggest that a slow-acting virus acquired many years ago, possibly prior to age fifteen, may trigger a series of slow reactions that lead to the ultimate formation of AntiBodies. One may find AntiBodies against specific viruses which affect the CNS.

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Current theories hold that AntiBodies produced in the body to fight a foreign substance or foreign virus instead attack substances known as Amino Acids that look like the invader.

Because of problems in its formation, the AntiBody cannot distinguish one Amino Acid from the other.

What then happens is the AntiBodies turn against the MSer's own Myelin and body proteins when they should have reacted only against the foreign substance or invader.

This Immune Reaction triggers exacerbations of MS. Certain MSers are more predisposed genetically to the disease if they have susceptible genes in their makeup. The most susceptible genes are known as the HLA-DR2 type.

Other predisposing factors are: Those that live in Northern latitudes are more susceptible, than people living closer to the equator.

Your chance of acquiring MS is determined pretty much by where you resided prior to age fifteen, suggesting that there was an exposure just before this period of life, though the disease may not appear until years later.

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AntiBodies are made by Lymphocytes, it is the T-Lymphocytes made in the Thymus Gland, rather than the B-Lymphocytes comming from bone marrow, that are crucial in Immunological reactions.

One type of T-LymphoCytes is the Suppressor Cell, which is more abundant during remission and disappears during attacks.

Other types of Lymphocyte - known as Natural Killer Cells, Helper Cells, Contra-Suppressor Cells, etc. - all play a participatory role, some for the better, others for the worse.

Medical Treatments: Investigational Options

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Symptomatic Therapy

Commonly, we treat Neurological Dysfunctions symptomatically, not to cure the disease, but to reduce the problems producing a functional improvement. ex.

The Spastic Bladder producing urgency of urination or incontinence may be reduced. This allows the MSer to sleep through the night.

Spastic Legs or Flexor Spasms of legs may be treated which reduces Spasticity by various mechanisms. Patients may stand and walk better, less stiff-legged, if the benefit is not compromised by side effects.

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Steroids

In the form of Prednisone or ACTH steroids may be used for acute attacks, when a spontaneous remission does not appear to occur.

The benefits of ACTH remain doubtful, but most doctors believe the duration and severity of acute attacks may be reduced. However, the long term course of the illness is not proven to be altered.

Relatively minor side effects may occur with steroids in a short course, and they should not ever be used for a long term due to potential complications.

Cyclophosphamide (Cytoxan)

Has been used since 1983, it may stop rapidly Progressive M.S. for up to two years in about two-thirds of treated patients. Long term side effects are: the potential for Bladder Cancer, Leukemia, and other complications.

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Copolymer-I & Cylosporine-A

These are powerful Immunological Reaction Suppressors, they may reduce relapses; but, the effects on the disease's progression is unclear.

Plasmapheresis

The process of transfusing Plasma out of the MSer's body for the removal of AntiBodies is still being debated by experts on Neurologic literature.

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Rehabilitation

Physical and Occupational Therapy and an ongoing exercise program play an important role in conjunction with medical drug therapy.